Friday, January 22, 2010

No Diagnosis, not now.......maybe not ever

Well.. we are home from phoenix childrens hospital, our meeting with their neurosurgeo​n went well, however it wasn't what i wanted to hear. To sum it all up, he did look at the slides and all the records i brought from banners so he did not come in to the room knowing not knowing anything like the dr yesterday. However, he did agree with the possible diagnosis we were given which was .. let me see if i can get this right without looking lol... desmoplasti​c infantile ganglioglio​ma astrocytoma.. not bad huh? lol Even though he has the same thought, he said often times with cases like this when so many people have looked at it and has had different opinions we may never have a definitive diagnosis or answer as to what it is. The way he explained it is that there are new tumors coming up every day, and tumors can transform from one thing to another and depending on what part of the tumor, especially one this huge, you can find different things. We may never know what it is.

He also mentioned that when babies have these congenital tumors their bodies don't recognize the tumor as being foreign, they don't know it's not supposed to be there, therefore the body doesn't fight it or do anything to prevent it from growing again. Even though the diagnosis might be a begnign diagnosis these tumors often times are very aggressive, they can grow back and grow fast and large. Because of their aggressiven​ess he recommends mri's at least every 2 weeks and most likely chemo therapy for at least 1 year.

At the end of the meeting I asked what the chances were of this thing growing back assuming they were able to remove the whole tumor. His reply was about 30 %. I don't know if those odds are high enough to constitute putting him through chemo.

From what he said there are times that they could presesnt a case like this to the board of oncologists and neurologist​s and teams, and they may never all agree on a path of treatment, and prevention, it's basically just up to the parent what path they decide they want to take and pray it's the best one. I don't know how they expect parents to make these decisions when these world renouned experts can't even agree, i don't know how to even come to grips with that.

On our way out the door the Dr. walked us out and he did make the comment that we are in good hands, that his surgery appears to be very successful, daniel is overall doing beautifully thus far and that he is going to be ok. He said not to expect it to end here, this is going to be a fight, there will be a battle, but the overall outcome looks very positive for him. I guess I have to prepare myself for the fight and get that in my mindset and come to grips with that.

We have 1 month to get the results from the pathology and this mri tomorrow, the eeg next week, and any other tests we can do, find out what the board of health professiona​ls have to say and put it all together and try to make a decision on his treatment plan and whether or not to do chemo. If anyone has any insight it is much appreciated​, if you want to respont in the guestbook or email me at andingurls@​yahoo.com.

I​t's such an emotional rollercoast​er, first they tell us he's dying, then he has 2-4 years to live, then he's cured, now he needs chemo and extensive follow up testing... all within about 6 weeks! How does anyone deal with that? I am still amazed at how little rese​arch and knowledge they have on childhood brain tumors. From what I understand there have been so many popping up lately that they have had to start having these board meetings once a week to present their cases vs once a month! Still no one knows why or what causes them.

Daniel is sleeping, I think I may go take a nap with him for now. I will continue to update as we find new information.​ Tomorrow is his MRI of his brain and full spine. It is said to take at least 5 hours. I don't know if we will get the results or not tomorrow but the surgeon did say he would do his best to look at them right away and give us a call friday if he can. I will post something either way to let everyone know. Thank you for reading!

Please don't hesitate to email or sign the guestbook, I am curious to read other people's insights and thoughts

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Holding on to hope and love

There is nothing more special than the love a grandmother can give. Grandma Jojo has been there everyday, taking laundry home to wash for brandi and brining food to eat. Jojo has such an amazing and loving heart for her children and grandchildren we are so blessed to have her in our lives. Thank you Jojo